ADC Online First, published on December 5, 2013 as 10.1136/archdischild-2013-304249 Original article
What parents want from doctors in end-of-life decision-making for children J Sullivan,1,2 P Monagle,3,4 L Gillam1,2 1 Children’s Bioethics Centre, Royal Children’s Hospital, Melbourne, Victoria, Australia 2 The Centre for Health & Society, The University of Melbourne, Melbourne, Victoria, Australia 3 Department of Paediatrics, University of Melbourne, Royal Children’s Hospital, Melbourne, Victoria, Australia 4 Critical Care and Neurosciences Theme, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia
Correspondence to Jane Sullivan, Children’s Bioethics Centre, Royal Children’s Hospital, Flemington road, Parkville, Melbourne, VIC 3052, Australia; [email protected]. edu.au Received 14 April 2013 Revised 9 August 2013 Accepted 1 November 2013
ABSTRACT Objective End-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This study aimed to examine parents’ views and experiences of end-of-life decision-making. Design A qualitative method with a semistructured interview design was used. Setting Parent participants were living in the community. Participants Twenty-five bereaved parents. Main outcomes Parents reported varying roles taken by doctors: being the provider of information without opinion; giving information and advice as to the decision that should be taken; and seemingly being the decision maker for the child. The majority of parents found their child’s doctor enabled them to be the ultimate decision maker for their child, which was what they very clearly wanted to be, and consequently enabled them to exercise their parental autonomy. Parents found it problematic when doctors took over decision-making. A less frequently reported, yet significant role for doctors was to affirm decisions after they had been made by parents. Other important aspects of the doctor’s role were to provide follow-up support and referral. Conclusions Understanding the role that doctors take in end-of-life decisions, and the subsequent impact of that role from the perspective of parents can form the basis of better informed clinical practice.
INTRODUCTION
To cite: Sullivan J, Monagle P, Gillam L. Arch Dis Child Published Online First: [ please include Day Month Year] doi:10.1136/ archdischild-2013-304249
The complexities and demands for parents and doctors in the area of end-of-life decision-making for children are well known.1–4 A number of studies have indicated what kinds of support are helpful to parents in end-of-life situations. However, there is less information in the literature so far on what parents specifically want from doctors in terms of decision-making at end of life, and how the doctor’s role in this may subsequently impact on parents. The level of responsibility taken by parents, and giving of recommendations by doctors are debated issues.4–6 One view is that doctors should provide guidance or recommendations to assist or even lead parents to a good decision, while the other view is that this is overly directive and does not allow parents to make their own decision.4 7 8 This sits in the broader question of whether parents or doctors should be the ultimate decision makers.9 A better appreciation of parents’ perspectives on these matters can inform and enhance clinical practice.
What is already known on this topic ▸ End-of-life decision-making for children is a complex, significant area for parents and doctors. ▸ There is little specific information available on what parents want from doctors in end-of-life decision-making. ▸ Greater understanding of parents’ preferences for the doctor’s role should enhance clinical practice and build practitioner confidence.
What this study adds ▸ Parents do not want doctors to be the ultimate decision maker for their child. ▸ Parents want doctors to support them to be the end-of-life decision maker for their child. ▸ In their decision-making and afterwards, parents find information, recommendations, referral and follow-up by their doctor helpful.
This paper reports and explores parents’ views of doctors’ roles in end-of-life decision-making, from a qualitative study of parents and end-of-life decisionmaking. As reported elsewhere, parents in this study unanimously believed that parents, if willing and able, should be the ultimate decision maker for their child. The parents reported that, in practice, they had taken one of three types of decision-making roles—self-determined, guided and acquiescent. Self-determined and guided roles in decisionmaking were both experienced by parents as them being the ultimate decision maker, but the acquiescent role was not. Each of these parental roles has a corresponding role for the doctors. This paper explores the roles that, in parents’ perceptions, doctors actually played, and also the role that parents would prefer them to play. The outcomes of this study indicate the need for doctors to carefully assess the role that parents want to have in decisionmaking, and support parents who want to be the ultimate decision-maker.
METHOD A qualitative method was used in this study, based on previous recommendations for research related to sensitive topics, especially in bereavement research.10–14 This methodology is ethically appropriate and capable of generating rich data.14–16
Sullivan J, Article et al. Arch Dis Child 2013;0:1–5. 1 Copyright author (or theirdoi:10.1136/archdischild-2013-304249 employer) 2013. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence.
Original article With the approval of the Human Research Ethics Committee of The Royal Children’s Hospital (30061 A), an invitational notice to participate in the research study was placed in the bereavement support newsletters of three organisations. The notices invited parents who fitted the following criteria to participate in the study: (1) their child had a life-limiting condition; (2) their child was aged between 3 months and 12 years at the time of death and (3) the parents had discussed end-of-life decisions and care for their child. Parents were invited to contact the principal researcher (PR) for further details. Parents who wanted to participate in the study contacted the PR to arrange an interview. Interviews were conducted at a venue chosen by the parent. Telephone interviews were possible if this was the parent’s preference. Thirty-two parents contacted the PR. Of these, 31 were eligible, and 25 decided to participate. No details are available for parents who decided not to participate. Semi-structured interviews with these 25 bereaved parents were conducted by the PR between October 2010 and April 2011. Interviews covered the following areas: the child’s story, parents’ experiences of the decision-making, including roles taken and views of who should make end-of-life decisions, influences in decision-making, supports, reflections on decisions, messages to healthcare professionals and other parents and research participation. Post-interview support was available to parents through the agencies that helped with the recruitment process and a community grief and bereavement service. No parent reported to the PR that they intended to use these services specifically for post-interview support. The interviews were audio-recorded, transcribed and thematically analysed by the PR using a four-stage thematic analysis method.16 A checklist for good thematic analysis17 was used as an aid to the process. To promote accuracy in coding, several early coded transcripts were reviewed by one of the co-authors. Themes were also reviewed by co-authors to ensure that the claims were supported by the data. Six major themes were identified: (A) the nature of an end-of-life decision; (B) the decisionmaking process; (C) factors in decision-making; (D) parents’ roles; (E) doctors’ roles; (F) the aftermath of an end-of-life decision. This paper focuses on doctors’ roles. This theme was comprised of two subthemes: parents’ perceptions of what happened, and parents’ views and preferences about what should happen.
RESULTS Parents Table 1 provides demographic details for the parents. Table 2 shows the children’s age at death and the time since their death. One parent had two children who had died. The time since the death of their child ranged from 4 months to 16 years. The average time since the child had died was 5.75 years. Table 3 provides details of the children’s life-limiting conditions
Doctors’ roles in end-of-life decisions: parents’ perceptions Parents reported their perceptions of the doctor’s role in decision-making for their child. The most basic finding was that doctors had discussed foregoing life-sustaining medical treatments with all parents. This included discussion with those parents who did not consider themselves as decision makers for their child. No decision to forego treatment had been implemented by medical staff without parents’ knowledge. In all but one situation, when doctors discussed foregoing treatment, it was discussed as an acceptable option. This exception was 2
Table 1
Parents’ demographic characteristics
Demographic variable Age
Marital status
Occupation
Number of parents
Age range 30–34 35–39 40–44 45–49 50–59 Married Divorced and single Re-partnered Widowed Separated Business owner: consulting, real estate, information technology or financial management Home duties Human service worker: welfare worker, integration aide, adult & child carer Nurse: various fields & divisions Commercial, trade & technical employees Information technology officer includes: programmer, manager Administration officer Retail employee Finance manager
4 4 9 4 4 19 2 2 1 1 5
4 4 3 3 2 2 1 1
where a parent initially felt she was required by the doctor to agree to cure-directed treatment for her child. So the doctor’s role in end-of-life decision-making always involved giving parents information about the child’s medical situation. The information was given to parents in verbal and written form. In relation to the more contentious issue of giving, or appearing to give, a recommendation, parents’ experiences were more varied. Some parents reported that doctors gave them a recommendation: these were parents who took a guided decision-making role. Others reported that they were not given any recommendation. A small number of parents indicated the doctors had not simply made a recommendation, but actually made the decision. These parents felt excluded from their rightful role in decision-making. One parent said: “Well I think we were basically told that that was the best thing to do [withdraw life-sustaining treatment] …because if you just keep
Table 2
Child’s age and time since child’s death Number of children
Age of child at death 3–6 months 7–12 months 13 months—2 years, 11 months 3 years—5 years, 11 months 8 years—9 years, 11 months 10 years—12 years Time since child’s death 4–6 months 1–2 years 3–4 years 5–6 years 7–8 years 12–13 years 15–16 years
4 1 3 9 2 2 2 5 2 5 3 2 2
Sullivan J, et al. Arch Dis Child 2013;0:1–5. doi:10.1136/archdischild-2013-304249
Original article Doctors’ roles after an end-of-life: parents’ perceptions
Table 3 Type of life-limiting condition Type of life-limiting condition Incurable—irreversible, deteriorating
Potentially curable— curative treatment failed and/or discontinued Severe disability— medically vulnerable
Diagnosis Neurological disorder, neuromuscular disorder, cardiac abnormality, metabolic disease, chromosomal abnormality, muscle disorder Cancer (neuroblastoma, neurofibrosarcoma) Spina bifida, brain damage, cerebral palsy
Number of children 10
6
5
going then you are just being cruel to her basically. Therefore you feel like you don’t have a choice”. (Parent 22)
Doctors’ roles in end-of-life decisions: parents’ preferences Parents wanted doctors to support them to be the ultimate decision maker for their child. Actions by doctors which assisted parents to fulfil this decision-making role were positively appraised. Parents wanted oral and written information about the child’s condition and its course. Additionally, most parents expressed the view that this factual information should be given in conjunction with the doctor’s opinion or recommendation about what to do. As one parent commented: “It’s like we want your educated opinion”. (Parent 19). Several parents who took the self-directed decision-making role indicated that they would have preferred some guidance: “You know you sit there like a three year old, well I did, going ‘give me the answer … please [names the oncologist] give me the answers’. And he couldn’t because he couldn’t be opinionated”. (Parent 8) An opinion was best received by parents when given clearly and explicitly but without being directive, so that it respected the parent’s right to be the actual and ultimate decision maker. Parents were critical of doctors who did not see the parents as being the decision maker for their child. For parents who ended up in the acquiescent role, where they perceived that the doctor made the decision, their subsequent appraisals of decisionmaking were more negative, and they had more enduring concerns about the process than other parents. Table 4 provides illustrative comments of parents’ reactions to doctors’ roles during decision-making.
Table 4
Most parents reported that the doctor’s role continued after a decision to forego medical treatment had been made. From the parents’ perspective there were two major aspects of the doctor’s ongoing involvement. The first was affirmation or support for the parents and their decision. This positive response to the parent’s decision might appear as a given, in that the decision had been practically supported by being enacted by the doctor. However, specific and directed comments from the doctor to convey support and respect for the parents’ decisions were appraised positively as being helpful. The second important aspect of the doctor’s role was follow-up and referral to appropriate ongoing services. This was especially the case if the decision that had been made resulted in a period of palliative care before the child’s death. Lack of follow-up, or failure to refer to ongoing services, was experienced and viewed very negatively by parents. Lack of follow-up had been construed by several parents as meaning that the medical staff did not support or agree with the parents’ decisions. For some parents, the lack of a medical bereavement appointment left unanswered questions about the specific cause of their child’s death. Table 5 provides examples of parents’ comments about doctors’ post-decision role.
DISCUSSION In this study, parents reported that the doctors’ major role in end-of-life decision-making had been to facilitate parents to be the decision makers for their child. All parents wanted to be the decision maker for their child. Generally, doctors provided the opportunity for parents to be decision makers. The parents thought that, in principle, parents should have this role, and the doctor’s role was to enable this to happen. Their preference was for doctors to provide timely, fulsome information. In the study, doctors had provided information, sometimes gave recommendations and respected parental decisions. This approach by doctors is in keeping with an ethos of parents as decision makers typically found in Anglo-Saxon countries18 and suggests that the principle of parental autonomy was respected by doctors. Unlike findings from studies in some other countries, such as France and Latin America,19 20 the doctors in this study were typically not the end-of-life decision makers for the child. In this study, when doctors made the decision for parents, the parents viewed the doctor’s action badly. It added to their difficulties after their child’s death. Perhaps this came from the
Parents’ reactions to doctors’ roles during decision-making:
Positive evaluation by parents of doctors’ roles compatible with parent as ultimate decision maker
Negative evaluation by parents of doctors’ roles not compatible with parent as ultimate decision maker
And I guess the doctors had prepared us at the initial diagnosis what the full range of options could be. When he did relapse they were pretty clear that it was unlikely that treatment would be helpful and there was the option of did we want to try for treatment for a cure, palliative type care, do nothing or some other options. (Parent 4)
…and also the night he was born where I had ‘[child’s name] the cardiologist he leant on the cot and said I think you should let him go tonight…. and I said you don’t know us, we’ve made the decision you follow instructions. (Parent 13)
So we had a view and (name of the neurologist) gave us a view and were aware it was up to us...(Parent 5)
In any decision-making for her we were irrelevant. ...The doctors, it was like the hospital owned her. And it felt like that. (Parent 19) And [name of oncologist] said,—well he said you’ve got no choice.... He said if you don’t treat her, we’ll treat her. (Parent 17)
But still had it open that it’s possible [invasive ventilation] but they didn’t recommend it. He spoke about the quality of the child’s life and how it would impact not only the child but also us... (Parent 6) Definitely it was yay or nay from us. And I don’t think we were pressurised. The reality was absolutely spelt out to us and we agreed with what they said. We realised it. That was it. (Parent 1)
Sullivan J, et al. Arch Dis Child 2013;0:1–5. doi:10.1136/archdischild-2013-304249
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Original article Table 5
Parents’ comments about doctors’ post-decision role
Positive evaluations by parents about specific affirmation of their decision or provision of follow up We received a hand written letter from [names the oncologist] saying you guys are great, making this decision, I wished I had told you that was the decision to make because that’s what I really felt for her. It was like getting a letter from God. (Parent 8) He [the neurologist] saw it in his heart to ….support us like, he came to our house after we’d made the decision and he sat us down and said right – are you sure? And he was very good ...we sat down at home he was probably there for two hours, or so…And he just kept saying this is huge, huge. Just make sure you’re really sure about it. It was really good of him to do that…he said ok, fine – this is the procedure we’ll take. (Parent 8)
Negative evaluations by parents about lack of follow-up She [the oncologist] said I don’t know how long she has to live. You’ll no longer need to come to [names the hospital]. You’re now in palliative care. And I said well where do I go to palliative care and who do I call and she said there are brochures in the hallway. So I had to get the brochures from the hallway to call the palliative care people… I had to make the call myself… Just a phone call, like your child’s been sent home to die and they won’t even give you a phone call. Not to mention a bloody phone [number] for whoever you go to see…I don’t know even if it was once a week, I’m not talking about every day it would be nice that there was someone who could call you and say how are you? (Parent 7) And that was very disappointing [the lack of hospital team follow-up] because you kind of felt you’ve gone against what society expects of you (Parent 8)
parent’s sense of failing in their parental role, or from not being convinced of the reasons to forego treatment. By contrast, recent research has found largely positive parental appraisal associated with decision-making by doctors.4 In studies conducted in France and Brazil, parents were satisfied with the doctor having made the decision.4 19 20 Cultural context may account for such variation.4 20 21 For example, Australians regard themselves as outspoken and anti-authoritarian,22 and hence, possibly less accepting of someone else making decisions for them. The study’s findings indicate that parents want the doctors’ role in end-of-life decision-making to include recommendations. Parents’ preference for doctors providing their recommendation has been found in previous research.23–25 Doctors may be ethically reluctant to recommend, however, construing it as coercing the parent and preventing an autonomous decision.26 27 Parents in this study did not experience being given a recommendation in that way. Giving a professional recommendation on the basis of professional experience and articulated professional values can be understood as part of full disclosure of information, and can be viewed as part of a doctor’s professional responsibility.8 28 This does not compromise autonomy and, indeed arguably enhances it.29 It is noteworthy that there were parents in this study who did not agree with or follow doctors’ recommendations, which provides evidence that it is possible for parents to make their own decisions even when given recommendations. The importance to parents of communication and support during end-of-life decision-making for children has been well established. This study highlights the significance of doctors continuing in this role after a decision has been reached. This included referral to support services, follow-up, including bereavement care, and affirmation of the decision. The needs of families with a terminally ill child are known to be extensive and evolving,30 so this finding is to be expected. Continued communication can reinforce parents’ confidence in their reasons for the decision. It can also answer their questions about physical processes of the condition and of dying, which may help to reduce future uncertainty or misunderstanding for parents. Referral for assistance and follow-up has emotional and practical benefit to parents, and can enhance final care for the child. Perhaps more surprising is the finding that an affirmation of the rightness of decision by the doctor was highly meaningful to parents and valued by them. Parents’ accounts suggest that the value may derive from the fact that the doctor had witnessed the parents in their decision-making, and appreciated the magnitude of their task. According to the parents in this study, family and friends had not participated in decision-making, so doctors were the only ones in a position to affirm. In written form, an affirmation may be conceptualised as a form of bereavement
support similar to the doctor’s condolence letter.31 32 Bereavement support is an acknowledged part of doctors’ responsibility33–36 but seeing affirmation of the decision to forego treatment as part of this is a new understanding. Post-decisional dimensions of the doctor’s role in end-of-life decision-making have not been extensively discussed in the literature.30 33–40 However, the findings of this study highlight the psychological and practical consequences if doctors don’t fulfil these parts of their role. This points to the need for the doctor’s role in end-of-life decision-making to be more comprehensively constructed.
4
Sullivan J, et al. Arch Dis Child 2013;0:1–5. doi:10.1136/archdischild-2013-304249
CONCLUSIONS Our conclusions from this study are: doctors should assist parents to be the ultimate decision makers for their child (if they want to take this role) and provide recommendations in a way that informs parents but does not take over from them. After parents make a decision, doctors should explicitly affirm this decision and support parents in it. These conclusions are based on parents’ reports of what they wanted when in a situation where end-of-life decisions for their child were needed. However, it may be objected that not all parents see end-of-life decision-making in this way. The sample in this study is limited by the ethical requirement of being a selfselected, voluntary sample, and it comes from a particular cultural and medical context. These are limitations, and cannot be avoided. This is why our conclusion contains the proviso about what parents want. This study can also be seen as limited because it does not include the perspective of doctors. We do not know whether the doctors actually did what parents reported. This is, however, a minor matter: regardless of what doctors actually did, it is clear what the parents wanted. Herein lies the main possible objection to our conclusions. Why should doctors think this is the right thing to do, just because parents want it? The crucial point here is that there is an independent ethical reason for regarding parents as the decision makers.41 In all other healthcare contexts, parents are recognised as having the ethical right to be the decision makers for their child.42 The concern has always been that the end-of-life context is different: that parents do not want or could not cope with making a decision that leads to their child’s death.4 9 19 38 The results of this study remove this barrier, by showing that at least some parents do want and can cope with this role. None of this means that doctors should always do whatever parents want, no matter how wrong they believe the parents decision to be. Doctors should always make their own assessment of what is in the child’s best interests, then discuss this with parents and make recommendations. In rare cases where
Original article doctors believe the parents’ decision will cause harm to the child, or not be in their best interests, they should explore, challenge and, if necessary, override the parent’s decision. This is also well established in ethics and law.43 In summary then, the major implication for practice is that doctors should talk with parents about the role that they want to play in end-of-life decision-making for their children, and then actively encourage and support parents who wish to be the ultimate decision maker in taking this role. This does not mean refraining from giving recommendations, but rather giving recommendations accompanied by clear explanations of the reasoning, because this will help rather hinder parents in the role they have taken on. Acknowledgements The authors thank the parents who participated in the study and those who reviewed the study material; for their generosity of spirit, their concern for other parents, and commitment to the professional development of healthcare professionals. The support and practical assistance given to this research study by The Compassionate Friends Victoria, The Social Work Department The Royal Children’s Hospital Melbourne and Very Special Kids and the aid of the Australian Centre for Grief and Bereavement, are gratefully acknowledged by the authors. Contributors JS conceptualised, designed and conducted the research study under the supervision of PM and LG, wrote and revised the initial manuscript and approved the final manuscript as submitted and is responsible for overall content. PM supervised the conceptualisation, design and conduct of the research, monitored data analysis, reviewed and revised the manuscript, and approved the final manuscript as submitted. LG supervised the conceptualisation, design and conduct of the research, monitored data analysis, reviewed and revised the manuscript, and approved the final manuscript as submitted.
12 13 14 15 16
17 18 19
20 21 22 23 24
25
26
Competing interests LG’s position is partly funded by the Royal Children’s Hospital Foundation. JS was the holder of an Australian Postgraduate Award.
27
Ethics approval HREC, The Royal Children’s Hospital (Melbourne).
28
Provenance and peer review Not commissioned; externally peer reviewed.
29
30
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What parents want from doctors in end-of-life decision-making for children J Sullivan,1,2 P Monagle,3,4 L Gillam1,2 1 Children’s Bioethics Centre, Royal Children’s Hospital, Melbourne, Victoria, Australia 2 The Centre for Health & Society, The University of Melbourne, Melbourne, Victoria, Australia 3 Department of Paediatrics, University of Melbourne, Royal Children’s Hospital, Melbourne, Victoria, Australia 4 Critical Care and Neurosciences Theme, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia
Correspondence to Jane Sullivan, Children’s Bioethics Centre, Royal Children’s Hospital, Flemington road, Parkville, Melbourne, VIC 3052, Australia; [email protected]. edu.au Received 14 April 2013 Revised 9 August 2013 Accepted 1 November 2013
ABSTRACT Objective End-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This study aimed to examine parents’ views and experiences of end-of-life decision-making. Design A qualitative method with a semistructured interview design was used. Setting Parent participants were living in the community. Participants Twenty-five bereaved parents. Main outcomes Parents reported varying roles taken by doctors: being the provider of information without opinion; giving information and advice as to the decision that should be taken; and seemingly being the decision maker for the child. The majority of parents found their child’s doctor enabled them to be the ultimate decision maker for their child, which was what they very clearly wanted to be, and consequently enabled them to exercise their parental autonomy. Parents found it problematic when doctors took over decision-making. A less frequently reported, yet significant role for doctors was to affirm decisions after they had been made by parents. Other important aspects of the doctor’s role were to provide follow-up support and referral. Conclusions Understanding the role that doctors take in end-of-life decisions, and the subsequent impact of that role from the perspective of parents can form the basis of better informed clinical practice.
INTRODUCTION
To cite: Sullivan J, Monagle P, Gillam L. Arch Dis Child Published Online First: [ please include Day Month Year] doi:10.1136/ archdischild-2013-304249
The complexities and demands for parents and doctors in the area of end-of-life decision-making for children are well known.1–4 A number of studies have indicated what kinds of support are helpful to parents in end-of-life situations. However, there is less information in the literature so far on what parents specifically want from doctors in terms of decision-making at end of life, and how the doctor’s role in this may subsequently impact on parents. The level of responsibility taken by parents, and giving of recommendations by doctors are debated issues.4–6 One view is that doctors should provide guidance or recommendations to assist or even lead parents to a good decision, while the other view is that this is overly directive and does not allow parents to make their own decision.4 7 8 This sits in the broader question of whether parents or doctors should be the ultimate decision makers.9 A better appreciation of parents’ perspectives on these matters can inform and enhance clinical practice.
What is already known on this topic ▸ End-of-life decision-making for children is a complex, significant area for parents and doctors. ▸ There is little specific information available on what parents want from doctors in end-of-life decision-making. ▸ Greater understanding of parents’ preferences for the doctor’s role should enhance clinical practice and build practitioner confidence.
What this study adds ▸ Parents do not want doctors to be the ultimate decision maker for their child. ▸ Parents want doctors to support them to be the end-of-life decision maker for their child. ▸ In their decision-making and afterwards, parents find information, recommendations, referral and follow-up by their doctor helpful.
This paper reports and explores parents’ views of doctors’ roles in end-of-life decision-making, from a qualitative study of parents and end-of-life decisionmaking. As reported elsewhere, parents in this study unanimously believed that parents, if willing and able, should be the ultimate decision maker for their child. The parents reported that, in practice, they had taken one of three types of decision-making roles—self-determined, guided and acquiescent. Self-determined and guided roles in decisionmaking were both experienced by parents as them being the ultimate decision maker, but the acquiescent role was not. Each of these parental roles has a corresponding role for the doctors. This paper explores the roles that, in parents’ perceptions, doctors actually played, and also the role that parents would prefer them to play. The outcomes of this study indicate the need for doctors to carefully assess the role that parents want to have in decisionmaking, and support parents who want to be the ultimate decision-maker.
METHOD A qualitative method was used in this study, based on previous recommendations for research related to sensitive topics, especially in bereavement research.10–14 This methodology is ethically appropriate and capable of generating rich data.14–16
Sullivan J, Article et al. Arch Dis Child 2013;0:1–5. 1 Copyright author (or theirdoi:10.1136/archdischild-2013-304249 employer) 2013. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence.
Original article With the approval of the Human Research Ethics Committee of The Royal Children’s Hospital (30061 A), an invitational notice to participate in the research study was placed in the bereavement support newsletters of three organisations. The notices invited parents who fitted the following criteria to participate in the study: (1) their child had a life-limiting condition; (2) their child was aged between 3 months and 12 years at the time of death and (3) the parents had discussed end-of-life decisions and care for their child. Parents were invited to contact the principal researcher (PR) for further details. Parents who wanted to participate in the study contacted the PR to arrange an interview. Interviews were conducted at a venue chosen by the parent. Telephone interviews were possible if this was the parent’s preference. Thirty-two parents contacted the PR. Of these, 31 were eligible, and 25 decided to participate. No details are available for parents who decided not to participate. Semi-structured interviews with these 25 bereaved parents were conducted by the PR between October 2010 and April 2011. Interviews covered the following areas: the child’s story, parents’ experiences of the decision-making, including roles taken and views of who should make end-of-life decisions, influences in decision-making, supports, reflections on decisions, messages to healthcare professionals and other parents and research participation. Post-interview support was available to parents through the agencies that helped with the recruitment process and a community grief and bereavement service. No parent reported to the PR that they intended to use these services specifically for post-interview support. The interviews were audio-recorded, transcribed and thematically analysed by the PR using a four-stage thematic analysis method.16 A checklist for good thematic analysis17 was used as an aid to the process. To promote accuracy in coding, several early coded transcripts were reviewed by one of the co-authors. Themes were also reviewed by co-authors to ensure that the claims were supported by the data. Six major themes were identified: (A) the nature of an end-of-life decision; (B) the decisionmaking process; (C) factors in decision-making; (D) parents’ roles; (E) doctors’ roles; (F) the aftermath of an end-of-life decision. This paper focuses on doctors’ roles. This theme was comprised of two subthemes: parents’ perceptions of what happened, and parents’ views and preferences about what should happen.
RESULTS Parents Table 1 provides demographic details for the parents. Table 2 shows the children’s age at death and the time since their death. One parent had two children who had died. The time since the death of their child ranged from 4 months to 16 years. The average time since the child had died was 5.75 years. Table 3 provides details of the children’s life-limiting conditions
Doctors’ roles in end-of-life decisions: parents’ perceptions Parents reported their perceptions of the doctor’s role in decision-making for their child. The most basic finding was that doctors had discussed foregoing life-sustaining medical treatments with all parents. This included discussion with those parents who did not consider themselves as decision makers for their child. No decision to forego treatment had been implemented by medical staff without parents’ knowledge. In all but one situation, when doctors discussed foregoing treatment, it was discussed as an acceptable option. This exception was 2
Table 1
Parents’ demographic characteristics
Demographic variable Age
Marital status
Occupation
Number of parents
Age range 30–34 35–39 40–44 45–49 50–59 Married Divorced and single Re-partnered Widowed Separated Business owner: consulting, real estate, information technology or financial management Home duties Human service worker: welfare worker, integration aide, adult & child carer Nurse: various fields & divisions Commercial, trade & technical employees Information technology officer includes: programmer, manager Administration officer Retail employee Finance manager
4 4 9 4 4 19 2 2 1 1 5
4 4 3 3 2 2 1 1
where a parent initially felt she was required by the doctor to agree to cure-directed treatment for her child. So the doctor’s role in end-of-life decision-making always involved giving parents information about the child’s medical situation. The information was given to parents in verbal and written form. In relation to the more contentious issue of giving, or appearing to give, a recommendation, parents’ experiences were more varied. Some parents reported that doctors gave them a recommendation: these were parents who took a guided decision-making role. Others reported that they were not given any recommendation. A small number of parents indicated the doctors had not simply made a recommendation, but actually made the decision. These parents felt excluded from their rightful role in decision-making. One parent said: “Well I think we were basically told that that was the best thing to do [withdraw life-sustaining treatment] …because if you just keep
Table 2
Child’s age and time since child’s death Number of children
Age of child at death 3–6 months 7–12 months 13 months—2 years, 11 months 3 years—5 years, 11 months 8 years—9 years, 11 months 10 years—12 years Time since child’s death 4–6 months 1–2 years 3–4 years 5–6 years 7–8 years 12–13 years 15–16 years
4 1 3 9 2 2 2 5 2 5 3 2 2
Sullivan J, et al. Arch Dis Child 2013;0:1–5. doi:10.1136/archdischild-2013-304249
Original article Doctors’ roles after an end-of-life: parents’ perceptions
Table 3 Type of life-limiting condition Type of life-limiting condition Incurable—irreversible, deteriorating
Potentially curable— curative treatment failed and/or discontinued Severe disability— medically vulnerable
Diagnosis Neurological disorder, neuromuscular disorder, cardiac abnormality, metabolic disease, chromosomal abnormality, muscle disorder Cancer (neuroblastoma, neurofibrosarcoma) Spina bifida, brain damage, cerebral palsy
Number of children 10
6
5
going then you are just being cruel to her basically. Therefore you feel like you don’t have a choice”. (Parent 22)
Doctors’ roles in end-of-life decisions: parents’ preferences Parents wanted doctors to support them to be the ultimate decision maker for their child. Actions by doctors which assisted parents to fulfil this decision-making role were positively appraised. Parents wanted oral and written information about the child’s condition and its course. Additionally, most parents expressed the view that this factual information should be given in conjunction with the doctor’s opinion or recommendation about what to do. As one parent commented: “It’s like we want your educated opinion”. (Parent 19). Several parents who took the self-directed decision-making role indicated that they would have preferred some guidance: “You know you sit there like a three year old, well I did, going ‘give me the answer … please [names the oncologist] give me the answers’. And he couldn’t because he couldn’t be opinionated”. (Parent 8) An opinion was best received by parents when given clearly and explicitly but without being directive, so that it respected the parent’s right to be the actual and ultimate decision maker. Parents were critical of doctors who did not see the parents as being the decision maker for their child. For parents who ended up in the acquiescent role, where they perceived that the doctor made the decision, their subsequent appraisals of decisionmaking were more negative, and they had more enduring concerns about the process than other parents. Table 4 provides illustrative comments of parents’ reactions to doctors’ roles during decision-making.
Table 4
Most parents reported that the doctor’s role continued after a decision to forego medical treatment had been made. From the parents’ perspective there were two major aspects of the doctor’s ongoing involvement. The first was affirmation or support for the parents and their decision. This positive response to the parent’s decision might appear as a given, in that the decision had been practically supported by being enacted by the doctor. However, specific and directed comments from the doctor to convey support and respect for the parents’ decisions were appraised positively as being helpful. The second important aspect of the doctor’s role was follow-up and referral to appropriate ongoing services. This was especially the case if the decision that had been made resulted in a period of palliative care before the child’s death. Lack of follow-up, or failure to refer to ongoing services, was experienced and viewed very negatively by parents. Lack of follow-up had been construed by several parents as meaning that the medical staff did not support or agree with the parents’ decisions. For some parents, the lack of a medical bereavement appointment left unanswered questions about the specific cause of their child’s death. Table 5 provides examples of parents’ comments about doctors’ post-decision role.
DISCUSSION In this study, parents reported that the doctors’ major role in end-of-life decision-making had been to facilitate parents to be the decision makers for their child. All parents wanted to be the decision maker for their child. Generally, doctors provided the opportunity for parents to be decision makers. The parents thought that, in principle, parents should have this role, and the doctor’s role was to enable this to happen. Their preference was for doctors to provide timely, fulsome information. In the study, doctors had provided information, sometimes gave recommendations and respected parental decisions. This approach by doctors is in keeping with an ethos of parents as decision makers typically found in Anglo-Saxon countries18 and suggests that the principle of parental autonomy was respected by doctors. Unlike findings from studies in some other countries, such as France and Latin America,19 20 the doctors in this study were typically not the end-of-life decision makers for the child. In this study, when doctors made the decision for parents, the parents viewed the doctor’s action badly. It added to their difficulties after their child’s death. Perhaps this came from the
Parents’ reactions to doctors’ roles during decision-making:
Positive evaluation by parents of doctors’ roles compatible with parent as ultimate decision maker
Negative evaluation by parents of doctors’ roles not compatible with parent as ultimate decision maker
And I guess the doctors had prepared us at the initial diagnosis what the full range of options could be. When he did relapse they were pretty clear that it was unlikely that treatment would be helpful and there was the option of did we want to try for treatment for a cure, palliative type care, do nothing or some other options. (Parent 4)
…and also the night he was born where I had ‘[child’s name] the cardiologist he leant on the cot and said I think you should let him go tonight…. and I said you don’t know us, we’ve made the decision you follow instructions. (Parent 13)
So we had a view and (name of the neurologist) gave us a view and were aware it was up to us...(Parent 5)
In any decision-making for her we were irrelevant. ...The doctors, it was like the hospital owned her. And it felt like that. (Parent 19) And [name of oncologist] said,—well he said you’ve got no choice.... He said if you don’t treat her, we’ll treat her. (Parent 17)
But still had it open that it’s possible [invasive ventilation] but they didn’t recommend it. He spoke about the quality of the child’s life and how it would impact not only the child but also us... (Parent 6) Definitely it was yay or nay from us. And I don’t think we were pressurised. The reality was absolutely spelt out to us and we agreed with what they said. We realised it. That was it. (Parent 1)
Sullivan J, et al. Arch Dis Child 2013;0:1–5. doi:10.1136/archdischild-2013-304249
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Original article Table 5
Parents’ comments about doctors’ post-decision role
Positive evaluations by parents about specific affirmation of their decision or provision of follow up We received a hand written letter from [names the oncologist] saying you guys are great, making this decision, I wished I had told you that was the decision to make because that’s what I really felt for her. It was like getting a letter from God. (Parent 8) He [the neurologist] saw it in his heart to ….support us like, he came to our house after we’d made the decision and he sat us down and said right – are you sure? And he was very good ...we sat down at home he was probably there for two hours, or so…And he just kept saying this is huge, huge. Just make sure you’re really sure about it. It was really good of him to do that…he said ok, fine – this is the procedure we’ll take. (Parent 8)
Negative evaluations by parents about lack of follow-up She [the oncologist] said I don’t know how long she has to live. You’ll no longer need to come to [names the hospital]. You’re now in palliative care. And I said well where do I go to palliative care and who do I call and she said there are brochures in the hallway. So I had to get the brochures from the hallway to call the palliative care people… I had to make the call myself… Just a phone call, like your child’s been sent home to die and they won’t even give you a phone call. Not to mention a bloody phone [number] for whoever you go to see…I don’t know even if it was once a week, I’m not talking about every day it would be nice that there was someone who could call you and say how are you? (Parent 7) And that was very disappointing [the lack of hospital team follow-up] because you kind of felt you’ve gone against what society expects of you (Parent 8)
parent’s sense of failing in their parental role, or from not being convinced of the reasons to forego treatment. By contrast, recent research has found largely positive parental appraisal associated with decision-making by doctors.4 In studies conducted in France and Brazil, parents were satisfied with the doctor having made the decision.4 19 20 Cultural context may account for such variation.4 20 21 For example, Australians regard themselves as outspoken and anti-authoritarian,22 and hence, possibly less accepting of someone else making decisions for them. The study’s findings indicate that parents want the doctors’ role in end-of-life decision-making to include recommendations. Parents’ preference for doctors providing their recommendation has been found in previous research.23–25 Doctors may be ethically reluctant to recommend, however, construing it as coercing the parent and preventing an autonomous decision.26 27 Parents in this study did not experience being given a recommendation in that way. Giving a professional recommendation on the basis of professional experience and articulated professional values can be understood as part of full disclosure of information, and can be viewed as part of a doctor’s professional responsibility.8 28 This does not compromise autonomy and, indeed arguably enhances it.29 It is noteworthy that there were parents in this study who did not agree with or follow doctors’ recommendations, which provides evidence that it is possible for parents to make their own decisions even when given recommendations. The importance to parents of communication and support during end-of-life decision-making for children has been well established. This study highlights the significance of doctors continuing in this role after a decision has been reached. This included referral to support services, follow-up, including bereavement care, and affirmation of the decision. The needs of families with a terminally ill child are known to be extensive and evolving,30 so this finding is to be expected. Continued communication can reinforce parents’ confidence in their reasons for the decision. It can also answer their questions about physical processes of the condition and of dying, which may help to reduce future uncertainty or misunderstanding for parents. Referral for assistance and follow-up has emotional and practical benefit to parents, and can enhance final care for the child. Perhaps more surprising is the finding that an affirmation of the rightness of decision by the doctor was highly meaningful to parents and valued by them. Parents’ accounts suggest that the value may derive from the fact that the doctor had witnessed the parents in their decision-making, and appreciated the magnitude of their task. According to the parents in this study, family and friends had not participated in decision-making, so doctors were the only ones in a position to affirm. In written form, an affirmation may be conceptualised as a form of bereavement
support similar to the doctor’s condolence letter.31 32 Bereavement support is an acknowledged part of doctors’ responsibility33–36 but seeing affirmation of the decision to forego treatment as part of this is a new understanding. Post-decisional dimensions of the doctor’s role in end-of-life decision-making have not been extensively discussed in the literature.30 33–40 However, the findings of this study highlight the psychological and practical consequences if doctors don’t fulfil these parts of their role. This points to the need for the doctor’s role in end-of-life decision-making to be more comprehensively constructed.
4
Sullivan J, et al. Arch Dis Child 2013;0:1–5. doi:10.1136/archdischild-2013-304249
CONCLUSIONS Our conclusions from this study are: doctors should assist parents to be the ultimate decision makers for their child (if they want to take this role) and provide recommendations in a way that informs parents but does not take over from them. After parents make a decision, doctors should explicitly affirm this decision and support parents in it. These conclusions are based on parents’ reports of what they wanted when in a situation where end-of-life decisions for their child were needed. However, it may be objected that not all parents see end-of-life decision-making in this way. The sample in this study is limited by the ethical requirement of being a selfselected, voluntary sample, and it comes from a particular cultural and medical context. These are limitations, and cannot be avoided. This is why our conclusion contains the proviso about what parents want. This study can also be seen as limited because it does not include the perspective of doctors. We do not know whether the doctors actually did what parents reported. This is, however, a minor matter: regardless of what doctors actually did, it is clear what the parents wanted. Herein lies the main possible objection to our conclusions. Why should doctors think this is the right thing to do, just because parents want it? The crucial point here is that there is an independent ethical reason for regarding parents as the decision makers.41 In all other healthcare contexts, parents are recognised as having the ethical right to be the decision makers for their child.42 The concern has always been that the end-of-life context is different: that parents do not want or could not cope with making a decision that leads to their child’s death.4 9 19 38 The results of this study remove this barrier, by showing that at least some parents do want and can cope with this role. None of this means that doctors should always do whatever parents want, no matter how wrong they believe the parents decision to be. Doctors should always make their own assessment of what is in the child’s best interests, then discuss this with parents and make recommendations. In rare cases where
Original article doctors believe the parents’ decision will cause harm to the child, or not be in their best interests, they should explore, challenge and, if necessary, override the parent’s decision. This is also well established in ethics and law.43 In summary then, the major implication for practice is that doctors should talk with parents about the role that they want to play in end-of-life decision-making for their children, and then actively encourage and support parents who wish to be the ultimate decision maker in taking this role. This does not mean refraining from giving recommendations, but rather giving recommendations accompanied by clear explanations of the reasoning, because this will help rather hinder parents in the role they have taken on. Acknowledgements The authors thank the parents who participated in the study and those who reviewed the study material; for their generosity of spirit, their concern for other parents, and commitment to the professional development of healthcare professionals. The support and practical assistance given to this research study by The Compassionate Friends Victoria, The Social Work Department The Royal Children’s Hospital Melbourne and Very Special Kids and the aid of the Australian Centre for Grief and Bereavement, are gratefully acknowledged by the authors. Contributors JS conceptualised, designed and conducted the research study under the supervision of PM and LG, wrote and revised the initial manuscript and approved the final manuscript as submitted and is responsible for overall content. PM supervised the conceptualisation, design and conduct of the research, monitored data analysis, reviewed and revised the manuscript, and approved the final manuscript as submitted. LG supervised the conceptualisation, design and conduct of the research, monitored data analysis, reviewed and revised the manuscript, and approved the final manuscript as submitted.
12 13 14 15 16
17 18 19
20 21 22 23 24
25
26
Competing interests LG’s position is partly funded by the Royal Children’s Hospital Foundation. JS was the holder of an Australian Postgraduate Award.
27
Ethics approval HREC, The Royal Children’s Hospital (Melbourne).
28
Provenance and peer review Not commissioned; externally peer reviewed.
29
30
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